Tuesday--Thanks for checking back in on our craziness. As I said in my last post, Sydney has been having a lot of O2 (sat) level issues. We have been treating them aggressively, but she is still not doing well. I have been watching her O2 sats like crazy...trying to understand what helps her heart rate, and what helps her O2 levels. I feel like we have several things going on, and I feel we have been in a tailspin---as I call it--on who needs to "fix" this problem. Today, Sydney had another major drop in her sats 64----then we got her back up to 81, and within 2 hours she was back to 75. None of this is ok. I know she has a heart defect...and I know she has 1/2 heart...but her O2 levels should be higher than this (should be upper 80's)....and she should be way more stable too. Mommy's gut saids there is something REALLY wrong. Well, as if this was not enough, both Aubrey and I got the stomach bug---that is 12 hours of puking. UGH! Just kill me please. I was able push through with the help of some meds, a really GREAT husband, and some REALLY great friends (Thanks Josie, Heather, Meredith, Michael and Jo!!).
Back to Sydney's O2 levels...we called the Cardiologist and left a message. Steve and Heather took Sydney to the Pediatrician. Josie and I managed phone calls, Aubrey and...well me... helping me to be able to function to physically better so I could handle what was going on with Sydney. We needed assessments and answers...now. Steve said Sydney's little hands were just blue. My baby is not suppose to be this color. The doctor gave Syd another breathing treatment, checked her O2 levels, check blood, urine, weight..etc. Her weight was up a little...which they thought was good (later to find out it was not). We thought she needed to be admitted at this point. Enough is enough...we are getting desperate to get her better. We have been watching Sydney just get worse and worse. The Cardiologist and pediatrician talked over the phone, and they felt Syd was stable enough to "try it (the new breathing treatment plan) at home", which was NOT okay with us at this point. I talked with Sydney's Pulmonary doc, and they felt...like we did..... that Cardiology needed to physically look at Sydney. I wanted a cardiologist evaluation and an echo done before the"try this new plan at home" plan was put into action. Cardiology saw Sydney, and agreed there had been a status change.
We got into to see the cardiologist. The first thing Dr F noticed was the size of Syd's tummy...large and distended. Sydney needs to drink a lot of fluid to profuse...but she right now she is in "fluid overload"(which her labs showed too). Her liver is "down", which means it is enlarged. When pushing down on Sydney's liver, you can usually feel the tip, but now it is the length of 3 fingers. Lasix was started, so she can start peepeeing this fluid off. Sydney is still in Junctional Rhythm, which is not a surprise, weight was 28.3 ounces (not really making any gains), holding fluid (which means any weight gains are not true),and echo was done. The echo showed Syd's heart function was good. No real leakages from her 2 valves, a lot of shunting (blood mixing due to the fenestration) and flow down (most likely causing the fluid build up). Dr F said because Syd had had a virus, UVA still needed to wait to do the cath until next week. Dr F said the cath should help Syd's flow, O2 levels and the fluid build up. Once this happens, we can better assess any lung/pulmonary issues...should they remain.....lets pray that they do not.
Dr F said Syd had a "Pulmonary hypertensive Crisis" or Pulmonary anemia...not a diagnosis of pulmonary hypertension at this point...which by the way, we DO NOT WANT. What is this?? According to Boston Children's Hospital" Pulmonary Hypertension (secondary) starts when the walls of the blood vessels that supply blood to the lungs constrict, or tighten up. This makes it more difficult for blood to get through to the lungs, and the heart must pump harder to overcome the resistance......when pulmonary hypertension occurs as a result of....... the effects of other diseases, it is referred to as associated pulmonary hypertension. Causes include.....heart diseases that cause shunting of extra blood through the lungs , such as patent ductus, ventricular septal defect and atrial septal defect" (which she does with her fenestration). My understanding of what all of this means is she needs to get lung/pulmonary stable (O2 sats stable, decrease in neb tx's and off of the oral steroids) and have her man made hole in her heart closed. The pressure in this "hole" has made this fenestration get bigger. It has gone from 4 cm to almost 9cm. Our hopes are that this closure should help lot. Once this is done, we can take a better look at what else may be going on with her breathing...possible airway reactive disease (like asthma).
Once the cardiology appointment was done..all parties agreed on the "new plan" changes Sydney needed to start 1)new neb meds (all 3 different kinds),2)continuing steroids just a wean down, 3)continue antibiotics,4) start lasix, 5)and continue her other meds. Heart cath pre-op is planned for March1. We will talk about the pressures, fenestration, lung issues and an ep study (to determine why she is not in normal sinus rhythm). The cath is still planned for March 4 at 10am. Sydney's recovery will take a few weeks from the stress it has been under. Once her fluid is back into balance, her body get used to the new pressure, then we should start see improvements. That is what we are praying for.
2/25/10
As of today, Sydney's O2 levels are better. She is staying in the low 80's. Her color is still poor. She is pale with a purplish tint to her lips. She cannot run or play, which is REALLY sad. The cardiologist needs to her rest, and she just cannot do it with out huffing and puffing. It is sad, and breaks my heart. Also, she is real temperature sensitive---when she gets cold, her sats drop---so we must keep her bundled up. Sydney is taking all of this pretty good, but she has been a little more cranky then norm. I admire her ability to be able to go with the flow as much as she does.
Thanks for checking in, and I will continue to keep you all updated. Please pray for my little girl to get better, so she can run and play.
Love,
Christy
